Posted: November 4, 2014
6 Years Old at Diagnosis
Jamie had been complaining on and off of abdominal pain and nausea when the severe itching started. We took her to urgent care but were sent home and told she was fine. A week later her eyes and skin turned yellow. We took her to a hospital near our house and while they could tell she was severely jaundiced and her liver and spleen were enlarged, we were sent home once again. Unsatisfied with their answer, our next visit was to the Children’s Hospital gastroenterology clinic.
Concerned about her worsening jaundice, they ordered an ultrasound. During the ultrasound, two techs and a radiologist noticed something in her liver. Our GI doctor, Dr. Narkowitz, ordered a CT scan. At the time we all thought she had gallstones and would need her gallbladder removed. About a half an hour after her CT scan, Dr. Narkowitz came into the waiting room with another doctor he introduced as an oncologist. That was the moment our world came crashing down around us. Never in a million years did we even consider that out sweet little 6 year old girl could have cancer.
She was immediately admitted to the hospital and a biopsy was ordered for the next day. Because of the location on her liver it was going to be a long surgery that couldn’t be done laproscopically. After three hours Dr. Narkowitz came out of the operating room and told us it didn’t look good, that they were almost certain it was malignant. The next day the oncology team came in to tell us that Jamie had hepatocellular carcinoma, a liver cancer that was extremely rare in young children and particularly resistant to treatment. In fact, Jamie’s case is 1 in 1.5 million. She also had biliary atresia, meaning the tumor had broken off and moved into her bile duct. This was also extremely rare and was the cause of her jaundice. Ultimately, it saved Jamie’s life. Since there wasn’t a lot of information out there about pediatric HCC, they recommended we look at CureSearch for more information. It was one of the only locations we could find to educate ourselves on this disease. We also recommended the site to our friends both for information and tips on how to help our family.
Our only hope now was that the cancer hadn’t spread outside of her liver so that the tumor could be surgically removed. After several more scans, we had our first piece of good news. We caught Jamie’s cancer in Stage I (thanks to the jaundice); they could resect her liver, and most likely remove all of the cancer. After a week of recovery from her biopsy, Jamie went into her second surgery. This one lasted six hours and included a blood transfusion. During the course of surgery, they removed the left lobe of her liver, her gallbladder and two of her three bile ducts. They had to re-route her intestines to connect with her remaining bile duct. Jamie was a champion and came through the surgery with flying colors.
The recovery was painful, including an epidural for pain management, a catheter, a GI tube and a central line. We have never seen someone so brave, as Jamie fought through her pain to recover as quickly as possible. She always had a smile for the staff and volunteers who were constantly working with us. We knew that pathology wanted to be as thorough as possible, but the waiting was interminable. However, on March 22nd we were told the best news of our lives, Jamie was officially cancer free!
We have at least a decade of follow-ups with our tumor specialist, Dr. Greffe, but are continuously grateful for a second chance with our daughter. She has returned to normal activity and is a happy, healthy soon to be 2nd grader. Jamie loves to dance, sing and play with her friends. Her spirits are high and she embraces life with an enthusiasm that amazes us all. Besides a large scar across her abdomen and the need for a healthy lifestyle because of her higher risk for developing other cancers, you would never know that we came so close to losing our little ballerina.
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